Patient perspectives: Amy Tenderich

Back in 2003 at the time of Amy’s diagnosis there was little in the way of online patient resources or online areas where patients could connect and share their experiences. Discouraged by the lack of connectivity and resources available, Amy was inspired to set up diabetesmine.

Amy shares her views here on why people don’t trust institutions, and how medical devices need to move with the times to fit into people’s busy lives. Amy also shares the importance of getting to know the individuals behind the big Pharma logos, which helps patients to believe that these organisations “have a heart”.

To listen to this interview, please click on the play button below, with a shortened transcript of some edited highlights shown in print below.

Quicklinks

0:11 – Amy’s background as an epatient

2:04 – What inspired Amy to set up diabetesmine.com

4:36 – Improvements needed for medical devices

6:19 – Amy’s experience of working with pharma

7:48 – How pharma could better interact with patient groups

12:13 – How pharma could improve how they are perceived

14:07 – What resources should be made available to diabetes patients that aren’t currently

15:18 – Amy’s take-home message to pharma

Interview Summary

RA: Amy, thank you for taking part in this interview. Could you start by telling me about your background and experience as a patient?

AT: I was diagnosed with type 1 diabetes, in my mid 30s. It was right after the birth of my third child, so I just assumed that I was exhausted. But I started to lose weight very rapidly and my vision went blurry. I ended up in the hospital for a week. I had gotten down to skeletal proportions, it was really scary – I was dehydrated and depleted. The doctors didn’t seem to know what to do with me, they had rubber stamped my type 2 because of my age, but even to me, who was a newbie, that didn’t make sense. They then pretty quickly took me off the orals and put me on insulin, but I was on far too much insulin in the beginning. I literally felt like I was having a nervous breakdown after every meal, shaking, getting heart palpitations, it was really frightening, especially when I had small children to take care of. I was afraid to get in the car with them, among other things. At some point I realised that I couldn’t live like that, and that’s what started me on my journey of becoming a patient advocate, and a so-called empowered patient.

RA: What was it that inspired you to start up diabetesmine.com?

AT: When I was diagnosed in 2003 there was no such thing as health social media. Like most people when they get blindsided by some chronic illness I felt this terrible sense of isolation. Nobody around me really understood what I was going through, and I had so many questions. I just felt like the rug had been pulled out from underneath me, and I needed some grounding, I needed to find some people to connect with. I was already very internet oriented so I went to the web looking for that help, and at that time I didn’t find it. There were no networks to connect with other patients, just a few chat forums that I found difficult to penetrate.

Mainly I found thousands of medical articles, and formal websites that really didn’t address any of my real-life concerns about living with this illness. So I had the impetus to start up the website that I had been looking for myself.

“I just felt like the rug had been pulled out from underneath me, and I needed some grounding, I needed to find some people to connect with.”

The whole notion of a blog was such a new thing at the time. But I just decided I would start up my own little publication, and write about my experiences. What I didn’t expect was to learn so much from the people who came to the site to interact with me, that they would be such an amazing source, and it became this fantastic dialogue.

So diabetesmine.com is a play on words. Diabetes is mine, I’m stuck with it, and there’s also the notion of a goldmine of straight talk and encouragement for people who are touched by diabetes.

RA: What improvements would you like to see in medical devices for diabetes patients?

AT: What I would like them to do, and they are moving in that direction, is to start envisioning these devices as life devices. There are amazing consumer electronics out there, such as the iPad and the iPhone, that have amazing sleek designs, offer ease of use, and have consumer appeal. There is no reason why medical devices shouldn’t be made with the same priorities and the same aesthetics. I wrote an open letter to Steve Jobs back in 2007, which got picked up all over the blog sphere and in the mainstream media, about pushing the diabetes world to design these devices. We have these devices literally attached to our bodies 24/7 a day, and they go with us everywhere. There’s no reason why they shouldn’t be smaller, sleeker, more comfortable, more easy to use and more personalisable. There are many devices still designed for a clinical setting, but thankfully not so many patients are now laid up in hospitals. We’re out there having these busy active lives, and we want these devices to be designed for that.

RA: What’s your experience been of working with the pharma industry?

AT: Historically there’s been a huge divide between the corporate giants, and these know-nothing patients who didn’t have access to and felt very exploited by these companies. The patient community still has a love-hate relationship with the pharma industry in the sense that we appreciate the medicines and devices that they make that keep us alive, but at the same time we do feel exploited by the overly-aggressive marketing, and their pricing policies, which are maybe not always in patients’ best interests. But from my experience of working closely with pharma companies, there are great people in these firms who really do care and who want to do the right thing. We’re luckily in an era in which social media tools are breaking down these walls so that these communities can get to know each other better and the human side of these companies can start to emerge. This will hopefully result in better designed better products for us, giving us improved experiences as patients.

“We’re out there having these busy active lives, and we want these devices to be designed for that.”

RA: Are there ways in which you think the pharma industry could better interact with patient groups?

AT: They are improving, and again a huge part of that is due to social media opening up this channel of a two way dialogue that never existed before.

Roche Diabetes Care in the US approached me and my partner a couple of years ago asking how they could connect with online advocates in the diabetes world. My partner and I suggested they host a summit and bring these bloggers in for a day of dialogue. The community could then get a chance to get to meet each other, and could also confront this company about their concerns as patients. It was brave of them, I give them kudos for taking the risk and inviting us in.

In 2009 there were about 30 people. It was contentious the first year owing to a lot of pent up anger about the pharma industry and what it has done wrong in the past. We gave them strong input that it couldn’t just be a marketing event, but it is about understanding real patient needs and concerns. They were very receptive.

They’ve hosted this summit now for several years in a row, and they have also kept up the relationship with the patient community by having quarterly conference calls and webinars, where they talk to us about patient concerns.

This whole event and interaction was so successful that the competitors are following suit. A number of companies are really doing a much better job, and again it’s facilitated by social media to identify who these people are and then reach out to them to try to have some real interaction with them, and listen to their concerns.

“In my opinion nothing is more motivating than seeing other people like you who are living the good life with this illness…”

RA: Do you think there are ways that the pharma industry can improve how they’re perceived generally?

AT: Again, getting into social media can really help as long as they’re doing it right, so by having that transparency and authenticity, and not just using it as a place to blast out more marketing messages. What it allows is for them to have their real people reach out to patient groups, and it does a world of good for us to see the faces behind the logos. There’s a line in a video for the American Diabetes Association annual conference – people don’t trust institutions, people trust people.

The more I get to know the individuals behind the companies, the more I feel much better about them. Knowing what kind of people they are that makes me feel like they have a heart, and that they’re not just this money-making machine. That’s incredibly important, as having the sense that these companies are just trying to steamroll us with their messaging and get us to buy more and more stuff is just upsetting.

Social media might seem like a threat to some companies because they’re worried that someone might post something negative, but really it’s a huge opportunity for them to reinvent themselves as a more responsive, caring organisation.

“I feel like the industry spent decades essentially ignoring patients, so it has a lot of catching up to do.”

RA: What resources and support do you think are the most helpful for patients with diabetes that motivate them to manage their disease?

AT: The online world and the online community are growing richer every day but there are so many patients out there who are still not aware of it. In my opinion, nothing is more motivating than seeing other people like you who are living the good life with this illness. It’s being able to connect with those people, to get their support, and also to just answer those real world questions that you have about the logistics of living with disease or the side effects you maybe experienced on a certain treatment. That’s information that no healthcare provider can give you.

RA: Finally, what is your key message to the industry, how do you think it could better meet patient needs?

AT: I guess the mantra is listen, listen, listen. I feel like the industry spent decades essentially ignoring patients, so it has a lot of catching up to do. We’re now in a new era of partnership, they need to respect and utilise patients more as partners. Only patients know the experience of living on these drugs and devices, so let them help you understand what the priorities are, what the message should be, maybe what the future should look like in terms of a road map.

Amy Tenderich is a journalist / patient blogger who started DiabetesMine.com after her diagnosis with Type 1 diabetes in 2003. Her site has become a leading online destination for people with diabetes and one of the top health blogs around the country and the world. In 2006, she won the LillyforLife Achievement Award for diabetes journalism from Eli Lilly &amp, Company.

She is the co-author, along with Dr. Richard Jackson of Joslin Diabetes Center, of Know Your Numbers, Outlive Your Diabetes – a unique motivational guide to the 5 key tests that everyone with diabetes should have and monitor regularly.

Amy is also community manager of DiabeticConnect.com, the fastest-growing and most successful social networking site for people with diabetes, with 400,000 registered members to date.

She recently joined DiabeticConnect’s parent company Alliance Health Networks, creators of social networks for people living with chronic conditions, as VP of Patient Advocacy. She’s extremely passionate about patient empowerment, and has become a well-known advocate for all people with diabetes and all engaged “e-patients” everywhere.

Amy lives on the fringes of San Francisco, CA, with her husband, three daughters, and a calico cat.